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Monday, 30 September 2013

It's increasingly hard to write this blog. So much of what I do goes unsaid, so much I can't share.

If I try to report an important meeting or key shift, I sound self-important or arrogant. Perhaps naive or cynical. My experiences today come from a million different moments, a million conversations. From reports I've read or speeches I've given. From looking deep into someone's eyes and trying to decide whether I trust them or not.

So every year, I buzz around Labour conference, squeezing every last drop of value from the people I'm lucky enough to meet, making every moment that I can count. I schmooze and I nag, I flirt and I chide, I try so very hard to convince and explain.

But I share it all with you less and less, aware that you only get my version of events, my opinions, my hopes.

This year, I spent a lot of my time with Stef Benstead (one of the lead researchers on ESA for Spartacus) and her friend and PA Claire Whittingham.

I thought it might be more interesting if Claire told you all how it was. I just asked her to truly write what she thought. I didn't want to know what it might say. A conference virgin, with no real political bias, I hope her experience tells you more than I ever could.

My answer is I was in that hall. In fact I was sat next to Sue moments beforehand. I was there after as well, after Sue had just spoken so passionately. I felt proud to know her and be part of Spartacus history. Let's face it, dear reader, it was momentous and incredibly special.

Having initially been asked by Stef Benstead to assist her for the duration of conference I didn't think I'd take a lot of what was to be said in, or take in who I'd seen. I now realise I was far from right on this. I felt empowered, intrigued, exhausted and politically starstruck!

Stef and I attended various welfare related fringe events at the various venues. Some provided refreshments, few didn't. Some were for a handful of people. Some were in the main hall. Stef had also hoped to attend a One Nation Church service on the Sunday, being a wheelchair user meant she needed accessible events and this was (according to the conference brochure) one of them.

Upon our arrival it was discovered there was no step free access! The church assistants couldn't apologise enough. All other venues, including the Brighton Centre, were accessible with some meaning you went a rather scenic route!

We had planned to meet with Sue, who we knew would be busier than the politicians as she campaigned on behalf of Spartacus, but didn't know we would spend 90% of our time with her!

The days were long and we would, on more than 3 occasions, have to rush about between events, but the sheer exhaustion was worth it. I discovered that Labour now use the term 'social security' as opposed to 'welfare'.

I can now confirm that Sue Marsh eats, sleeps and breathes Spartacus. Every person we met along the way now knew about Spartacus. We met Liam Byrne, Dame Anne Begg, Anne McGuire, Sheila Gilmore, Lord Glasman, Jon Cruddas and several other political figures including John Prescott and Alastair Campbell.

Journalists and peers kept giving her cuddles!

There were also opportunities to meet with people from various disability charities such as RNIB, for whom Sue was on a panel at a fringe event, Mind and Scope. Sue Marsh works her backside off. She doesn't do it for any monetary gain, fame or notoriety. "The Marsh", as I refer to her, does it for every single claimant affected by ESA and DLA changes. Sue does work even when she's poorly in hospital. And you know what? Not once did I see her complain about pain. I think I can safely say she ran on adrenaline throughout the conference. However, her mobility scooter driving skills did have myself and Stef laughing lots!

The fact ministers, MPs, journalists and so many other people stopped Sue to talk spoke volumes. She's very well respected by many associated with Labour. I hadn't realised, truthfully, just how much work Sue has done behind the scenes. I know so many have contributed too, so thank you to those who do so much as well.

To have been a part, albeit a very minor part, of the Labour conference was a privilege. To have been able to witness what both Stef and Sue do daily was wonderful. To see Sue speak passionately at panel events and the LabourList Rally was amazing. I wish I could do that every day.

The conference is being held in Manchester next year. I'm definitely going! I have to. Not for personal reasons but to help The Marsh and others spread what Spartacus is about. I learnt so much my head hurts but my whole opinion changed. If Labour get elected into 10 Downing Street and stick to their promises for Social Security then many thousands shall benefit, including myself.

So next time someone asks you about Spartacus or Sue then don't be afraid to say what you've read here."

Catherine Hale is researching the Work Proramme for those in the WRAG (Work Related Activity Group of ESA). She's written this guest post asking for case studies to help....

"Hi, I’m on ESA because of a chronic health condition and I’ve been put on the Work Programme to support me into work. The results from the first two years of this new scheme show that the Work Programme is not doing as well as the government hoped at helping disabled people into work.

I want to help policy makers understand what’s going wrong. I’m conducting research to see if other people are having the same kinds of experience with it as I’m having.

I’ll be putting a proper tick box survey online in the next few weeks with the charity Mind. But in the meantime, could you help me gather as many people’s experiences as possible to get first impressions?

If you’re on ESA and have been referred to the Work Programme, either by choice or by compulsion, please could you write in (as much or as little as you like) about whether it has worked for you? The Work Programme is separate from Jobcentre Plus and there are different organisations running it depending on where you live, with names like Ingeus, Serco, A4E etc.

Are we really so lost that we can’t think of anything to say that doesn’t sound a bit Tory? So meek that we’ve forgotten how to frame our argument? Are we really only left with “scroungers” and “cutting a bit less”?

Of course we’re not. People want to hear that we can be a great country again. That we can recover from the mess caused by the global financial crash together and come out of the other side stronger. They want to hear that this is an opportunity. A once in a lifetime chance to stop and take stock, to think about society in a fresh, empowering, way.

They want a blueprint for business that focuses on development and excellence and innovation. From science to medicine to new technologies and a world class green economy, using the pioneering skills we’re so good at developing.

The public know that this is a unique chance to question and improve the economic systems that could be making the world a better place, not a greedier place. They want a global response from politicians with the vision to work together. They don’t want us to batten down the hatches in fear, impotent and trapped, they want us to move on with confidence.

They want to hear that we will focus on excellence and diversity of education for every single child – they instinctively know that this leads to work and wealth.

They want to be told that if the rest of the world wants to race to the bottom, the UK wants to reach for the top. That brave politicians can choose not to make people suffer and instead, will stretch every fibre of imagination and resourcefulness – especially in tough times – to help them get on.

Do you have to be anti-business to say “Hey guys, how about we set up an “All in it Together” programme? “Voluntary contributions from the biggest businesses in the UK to fund apprenticeships, keep libraries open, fund scholarships or training?” If there was a sense that we really are all in this together, I have a feeling confidence would change overnight.

Why does it all have to be “tough” and “austere” and divisive? Why can’t it be co-operative and inspiring and bold?

Labour will win voters back when we remember how to be confident. When we remember that good Labour policy is usually positive and inspiring, not negative and judgemental. By making our message one of hope and optimism, we back the coalition into an austerity corner. A gloomy, cutting, destructive, economy-stifling, corner.

We hear that Iain Duncan-Smith may announce a scheme whereby
jobseekers will be forced to work 30 hours a week in exchange for their
benefits. Quite when they are expected to look for work is another matter, one
that appears not to trouble IDS.

And hark! What’s this I hear? Is it the sound of right wing
think tank hooves clattering in to save the day? A perfectly timed “study” that
should be ashamed to use the name, released and heavily trailed by the Daily
Mail to convince an unsuspecting public yet
again that an army of feckless scroungers deserve all they get?

Hail the all distorted Policy Exchange and a howler of a “study”assuring us the public are all in favour and the divide and rule rhetoric of
the last few years is paying dividends. But let’s take a closer look shall we?

In the opening words we are assured

“if any government is serious
about both tackling the issues of long-term unemployment and concentrated
benefit dependency and improving living standards for millions of workless
individuals and households, further reforms will be needed.”

Who says? This conflates relatively small number of long
term unemployed with wider jobless figures.

“Evidence from both
fully implemented schemes and pilots has shown that they can be effective in
moving people off benefits.”

What evidence? Citations please? As far as I’m aware there
is no evidence that sanctions work long term. The author goes on to cite a
handful of American and European schemes entirely selectively to “prove” his point. Oddly, he doesn’t
mention the astonishing failure of the UK Work Programme anywhere...

“For instance, in some
trials between a third and a half of eligible claimants move off benefit rather
than turning up for the placement”

Why? Implication is they were cheats – did they find work?
Did they feel unable to comply with the sanction? Did their health stop them? Unless
we have that information it’s a totally pointless sentence. But one that sneaks
in a nice little value judgement.

“Workfare schemes are
also popular with the public.”

Where are the actual YouGov tables please? Where are ALL of the
questions actually asked? How were they framed? Was any background information
given (ie relatively low numbers of long term unemployed, poor performance of
work programme for sick/disabled etc?)

“Up to 10% (65,000) of
individuals leaving the Work Programme without finding work after at least two
years of support should be moved onto a workfare scheme”

Define this 10% please – why was it not defined in the
headlines? Figures of “80%” “52%” etc, imply it is for all claimants.

“A further 10% of
those with the most significant barriers to work should be moved onto a separate
scheme, Route2Work, which would provide support through expert third sector providers,
social enterprise and social finance.”

Should we not be asking why the Work Programme is failing
people in those first two years, rather than introducing yet ANOTHER scheme to
pick up the pieces?

“Workfare schemes
should also be considered as a sanctioning option for benefit claimants who are
not undertaking the jobseeking activities that they should be”

EXTENSIVE evidence shows that in many cases they cannot. To
qualify for Employment and Support Allowance, a claimant must score 15 points.
This denotes a very considerable degree of ill health or disability. As an
example, someone with bowel disease may only qualify for long term
unconditional support if they are FULLY incontinent (not partially) or are fed
intravenously. Anyone else, no matter how sick, how much surgery they need,
will be found fit for work if the qualifying descriptors are adhered to faithfully.

This leaves an army of people with long term conditions or
significant disabilities, scoring between 1 and 14 points, with very
significant barriers to the labour market, being treated as jobseekers. Often
the JCP contact who sees them first disagrees with the assessment of fitness
for work, leaving the claimant in a kind of limbo, bouncing backwards and
forwards between a sickness system that will not support them and a labour
system that won’t engage with them.

If they ARE placed in the Work Programme, both anecdotal and
statistical evidence shows that they will be the most poorly served.
Contractors “cherry pick” the easiest to help and “park” harder to help
claimants with very little interaction. It is commonplace for claimants to
receive just two phonecalls during the entire time they are on the “Work”
Programme. Steven Lloyd, disabled MP, recently said
he would like to “chuck someone out of a window” following the utter failure of
Work Programme to help these people in any way. http://www.disabilitywales.org/1168/4795

All the while we have a system failing sick and disabled
people so utterly, further sanctions are self-defeating and cruel.

Mr Holmes refers to “the
generosity of, the existing benefit system”

Nonsense. The UK has one of the most punitive overall social
security settlements in the developed world.

Youth unemployment has
been on an upward trajectory since in the early 2000s, rising from 248,000 in
2001 to 369,000. Over 68,000 have been claiming for more than a year.

Oh, selective reporting eh!! Youth unemployment fell from
1997 until the global financial crisis, down almost 90% over that period. The
global financial crisis in 2008 hit the young hardest leading to sharp
increases. If we take figures from only 1997 – 2013, it is possible to paint a
picture of systemic rises. This is misleading and has no place in a rigourous
study.

I’m SICK of right wing think tanks releasing “research” set
to prove exactly what Iain Duncan Smith demands. SICK of “evidence” with no
citations – nowhere in the study could I find the actual data tables from the
YouGov “survey” that apparently found the public want everyone unfortunate enough
to have no job to work for free indefinitely. Just a few cherry picked results
with no qualifiers at all. Respondents are simply asked if those out of work
for 12 months or more should be made to work for their benefits. Absolutely no
information to make that decision. A “research” paper that quotes “surveys”
with no link or data tables for goodness sake!!!

I’m SICK of half truths and misleading sentences. Sick of
cherry picked data that uses random figures to paint false pictures. Sick of
assumptions about the Labour market and fraud that just aren’t true. Sick
of assumptions that sanctions work
better than incentives when all the evidence points to the contrary.

And most of all I’m SICK of “studies” that suggest that
because “the public” support their point of view it must be OK. We are told to
believe that because a public fed false information at every turn now believe
what they have been told to believe, however untrue, it is justification for
going even further, destroying even more lives.

The “research” was written by an Ed Holmes who is apparently
Senior Research Fellow for Economics and Social Policy!!!!! What a grand title
for someone so willing to twist and stretch data like elastic!!

A few weeks ago, a judicial ruling in Scotland found the government to be acting unlawfully over certain aspects of the bedroom tax.

However, most of us had no idea whether that would set any kind of precedent for UK law.

Well, today a judge has ruled against the Conservative controlled Westminster council. The guardian report that

"A central Londonhousing association tenant has won an appeal against the imposition of the bedroom tax by Conservative-run Westminster city council, in what is thought to be the first such victory in England"

The judge ruled that

"The term 'bedroom' is nowhere defined [in the relevant regulations]. I apply the ordinary English meaning. The room in question cannot be so defined."

A) Sack Atos
B) Strengthen the law on Disability Hate Crime
C) Develop a "tell us once" assessment system for social care, benefits and work support that rolls all help into one place.

But there's more. MUCH more. Watch conference tomorrow for a much fuller proposal on what Labour have concluded the problems are with sickness and disability support and in the near future, for more proposals on how to change things.

These "tasters" are to prove they're serious. To show that whilst there is still much, much more work to do, there are things they can announce TODAY that show they've listened and are starting to understand.

Of course we will be cynical. Of course we will doubt their real intentions. We would be fools to do anything else.

Wednesday, 18 September 2013

Way back in May 2011 I wrote this post about living with a long term illness or disability and working. Here's an excerpt :

"If you don't have MS or bowel disease or cancer or schizophrenia or alcoholism or parkinson's or lupus; if your research is conducted in an academic bubble of theories and sociological studies and think-tank jargon, you might as well be designing policy for fish. However much an affluent, out-of-touch politician might think a theory is the answer to all their prayers, you simply cannot make an unsound theory fit reality without cheating. An alpha-male, who has sailed through life without physical trauma, poverty or disadvantage, will simply be totally unable to empathise with the nuances of suffering. They can no more design a welfare system that works than I could design a new offside rule.

Until sick and disabled people start to put forward their own suggestions, their own answers, we will remain in the hands of ignorance and arrogance. Until we are at the heart of policy making, we will suffer policies that may as well have been designed by aliens. The time has come where it is no longer enough to oppose, we must educate and inform. We must save ourselves, because my endless nights spent poring over welfare papers has convinced me that we have no alternative. Privileged academics and politicians have proven themselves horrifically incapable of even beginning to understand our lives and if we are to get a welfare system that actually works for us, we need to start making suggestions. We have the experience, the knowledge and the understanding and they never will.

So today, please use the comment thread below to explain what would help you. Contribute your ideas and suggestions no matter how silly or unformed you think they are. Share your stories of trying to work and how the system has failed or supported you. Make them essays or make them just a few words. I don't care how long or short they are. Tell me what work you could do and what support you would need to do it. Does the state itself trap you? What could business do to enable you? Is there a working model that could suit you? What type of work would you like? Why is it unavailable? Do you want to work? Would it make you better or worse? Would it increase your affluence or plunge you further into poverty? In an ideal world, what would governments be doing to support you?

Remember, this is a brainstorm. Write anything. It can't possibly be more banal, mis-guided or unworkable than the suggestions of successive politicians.

Please help. Join in, engage, show politicians our endless strength, our great value and our hopes and dreams. Help me and I'll do my very, very best to help you.

As I started this article by explaining, I have been given a voice. I have the privilege of a platform. It's your platform too and I need you to share it. Otherwise, I might just end up as another mis-guided fool who thinks she knows it all. I can speak for myself, but I can't speak for you."

The consultation was my most successful to date with over 400 responses. Some brilliant ideas came out of it, a real picture of how work fails us.

Since 2011 I've been working to try and put shape to your experiences and put together a report that looks at work and long term illness or disability from the perspective of those who really know. You. It will offer real solutions, not just empty criticisms. It's nearly finished and will be submitted to the Labour Policy review, the taskforce on disability and poverty and Liam Byrne's office.

This will be my focus for the next few weeks. I will be publishing a survey for you to fill in and asking you to feed into the report as much as possible. It's clear that increasingly, society must find a solution to this problem - and left unguided, the evidence shows that those solutions will be punitive, ignorant and damaging. We have a chance to be heard, to re-frame the debate. As I write, many similarly misguided politicians and academics are trying to solve problems they can never comprehend.

In the comments beneath this article, please leave your stories - did you work? How long for? What work did you/do you do? Did it become impossible? What support did you get when your illness or disability limited your ability to work? Did it help? What do you feel able to do now? Could you work at all? What kind of work could you manage? What is the ideal solution that would enable you to do some work however little? What stops you from doing any work at all?

Every story you share brings us closer to solutions. Every one of you who takes part will know that we did everything we could to change a system that is hurting us, degrading us, abandoning us.

Please help me to get this right. Because you can be very sure others will not ask you. Yet again, they will design systems based on air, policies based on ideology.

Sunday, 15 September 2013

I've just read the most heartbreaking email relating a story most of us are so very familiar with.

Failed for years by the NHS, no diagnosis, no support. In time, that meant failed by her family and friends too, who couldn't quite believe so many learned experts could be wrong. Failed by a career she could no longer do, failed dreams, failed ambitions.

Finally a diagnosis, life saving surgery and a new battle. A battle for support we should be proud to give without question.

Lost forms, Atos, wrong decisions, appeals, lost letters, more appeals, reconsiderations, brown envelopes of terror thudding on the mat like constant nightmares.

I read them all day, every day. Endless accounts of hardship and loss and despair. Lives clinging to something that isn't life. Something that is dark and cold and hungry and abandoned. Something small and broken. Just a glimmer of something steely and true sees them through. They try to end it. Not once but again and again. but there is no end. In their minds, this is all there is.

Well it ISN'T all there is. We ARE winning. We WILL win. Because however long it takes, however much pain we feel along the way, justice always wins. Raquel Rolnik, special rapporteur for the UN has called for the UK government to scrap the Bedroom Tax. She will, it is widely reported, also call for them to scrap the Benefit Cap. They are unlawful under every global convention on human rights. She is now asking for you all to send in your stories and evidence relating to ESA, Atos and Work Capability Assessments. I want to beg every last one of you who has written to me, who has shared your story, who has filled in a DWP form, who has been mistreated and let down to write to her.

When I read emails like the one I read today, I am ashamed of my country. Disgusted by the horrors we are leaving unchecked. If you all tell your stories as faithfully and beautifully as you do when you write to me, I fear she will be a very, very sad woman when she reads them all - and she has pledged to read every one.

If you have ever written to your MP because I asked you, or written to a local paper, or fought on against the DWP when all you wanted to do was cry, WRITE NOW. This is what Spartacus is, it is what we do.

TELL YOUR STORIES. If you never told it before, this is the time to be brave and be heard.

Please share this post everywhere. Make sure that everyone knows about this. I will be focusing on anything that relates to the 1 year Time Limit of ESA. If you have been affected by this particular part of ESA, please consider sending me your story via email and I will add it to the report I send Ms Rolnik. Obviously all details will remain confidential if requested.

Thursday, 12 September 2013

Most of you will know I've been a teensy weensy bit bit busy these last few weeks.

But on Tuesday, the BBC reported on the latest British Social Attitudes Report. This is no one-off YouGov poll, the survey tracks the nation's attitudes over time, interviewing 3000 people in 2012 for more than an hour.

The latest report showed that attitudes towards welfare payments have softened considerably over the last 12 months. Whilst 51% still felt that benefits were too high, this figure had fallen from 62% in the previous year. The proportion of people who felt that benefit cuts would damage too many people's lives rose 5% from 42% last year to 47% this year.

But In my opinion it is almost all that really matters. The only way ministers have been able to do what they've done is by misleading the public. As a TUC report showed last year, the gulf between what people think social security payments do and what they actually do is vast. The convenient myth that out of work benefits are crippling our country was shown to be just that - a myth with just 3% of the entire social security budget going towards Jobseekers Allowance whilst a whopping 47% is spent on pensions.

Since the day I typed my first word on this blog, all that has mattered to me is breaking down these mis-conceptions. Until the public really understand what benefits are for, who they are paid to and why they are so fundamentally important, MPs could create a false dialogue that was almost impossible to challenge.

Campaigners such as myself have spent long hours convincing MPs - in this case, particularly Labour MPs, that by 2015, disability cuts would be the most toxic issue in the country. We used evidence, we showed them just how many people would be affected by various changes. We told our stories, we showed the country what happens when real people, real lives are affected.

Sometimes, it has seemed as though no-one wanted to listen. Sure, we can persuade some MPs, some journalists, but until there is a sea change in public opinion, as an election hoves into view, MPs would still feel secure to "go hard on Welfare", to use us as political pawns in a muscle-flexing-fest of toughness.

This survey gives us the clearest indication so far, that whilst we may still lose too many battles, we are winning the war. As people up and down the country begin to know someone who has been unfairly affected by the coalition welfare changes - a brother with cancer told he is fit for work, a Gran left in her own mess as her carer hours are slashed, a daughter forced to move away with her disabled child due to the Bedroom Tax - we inch slowly closer, every day, to breaking through.

There are two more years to go. This survey actually reflects opinion from 2012. Between then and now barely a day has gone by without someone exposing a new failure at the DWP or a new life destroyed by unfair cuts. I'd be astonished if the next survey didn't show even sharper increases in support.

This awful battle can be demoralising. It's hard to bear the onslaught of misery, fear and suffering. But studies like this one show us as clearly as possible that it is worth it. We are winning and every day brings us closer to the end of these dark, dark, days.

Wednesday, 11 September 2013

So, yesterday, as most of you will know by now, representatives from Spartacus finally got to meet with Mark Hoban to discuss Employment and Support Allowance and Work Capability Assessments after almost a year of trying.

Other online groups representing sick and disabled people had felt very strongly before the meeting that it should be made explicitly clear that WCAs should be scrapped. They are unfit for purpose and no amount of tinkering with descriptors or processes will change that.

We agreed, but felt that for that approach to be credible, there had to be alternative suggestions in place. Happily, in just 24 hours, all of the online groups representing sick and disabled people were able to agree to this solution in time, meaning that we could go into the meeting with the whole weight of the online campaigning community behind us.

We agreed that we would raise the issues people had agreed in extensive consultations on my blog to be the most important and "listen" to what the minister said on these issues, suggesting things that could at least make the process safer in the meantime until we were able to put together an alternative proposal.

With this in mind, here is a summary of the issues we raised and Mr Hoban's responses. We feel that the meeting was remarkably productive in this sense.

"Before any further discussions took place, Sam explained that there was widespread support for abolishing WCAs. The system causes stress, fear and anxiety, it is not trusted and we doubt that any amount of "reform" would now be able to change that.

Sue opened the meeting by saying that we hoped we could break down the oppositional, partisan and confrontational stance that has often blighted discussions over ESA. She asked for genuine engagement. She pointed out that we had only ever tried to present helpful, evidence based research, aimed at showing how WCAs affect real people. She suggested that we all had experts and networks that could be valuable in re-designing a new system.

Mr Hoban appeared to listen carefully. He and three civil servants all took notes during the meeting. They did seem to genuinely want to discuss issues openly with us. We're delighted to say that the meeting had none of the frustrating stonewalling or fudging of some parliamentary debates.

45 minutes passed in the blink of an eye and sadly, though we did ask the questions, there was no time to pin down answers on where things stand on mental health assessments/champions and the decision to divide physical and cognitive conditions when it comes to scoring points during an assessment. However, the Chief Medical Officer gave us his card at the end of the meeting and we agreed to chase up or define any issues that we weren't clear on, so this will be an opportunity to clarify.

Mr Hoban appeared to particularly agree on gathering medical evidence earlier in ALL claims. Civil servants confirmed that an ESA113 was only sent to GPs in limited circumstances. Mr Hoban agreed that medical evidence was crucial at the earliest stage and accepted that sending an ESA113 in ALL cases as soon as the claim is received might be a solution. They accepted that GPs don't always return this evidence and agreed to do more to make sure that they do.

Sue suggested that explaining and suggesting the use of "Reliably Repeatedly and Safely" on the ESA50 form more often would be very helpful and Mr Hoban appeared to agree that this would be a helpful change. He particularly agreed that there is a need for more guidance to help people complete their forms in a way that would ensure they give the information needed to make decisions. He told a story of one of his own constituents who had filled in the form particularly badly. He said he thought he could have done a better job himself after just 5 minutes with the constituent and that it was clear much more guidance could be included to help with the process. They committed to looking again at what could be done with some urgency.

We asked about universal audio recording of assessments and urged that this was the only way to truly know that assessments had been conducted fairly and accurately. Mr Hoban was not entirely convinced that this was the case and cited examples of HMRC losing audio files, which had created even more suspicion. He didn't rule it out however, and did say that letters would be amended to say that the option was available to all claimants.
We asked about the Evidence Based Review (EBR) and trials of new descriptors for Mental Health and Fluctuating conditions. It was clear from the civil servants that this was taking longer than they had originally envisioned. It had proved harder than anticipated to develop robust descriptors that claimants couldbe compared against and which could be tested; some of the original submissions had been too vague to be of practical use. They did agree that so far it is clear that lessons can be learned from this alternative assessment. Sue asked what would happen if the new descriptors were more generous to claimants and would cost more to implement. Would they say it was just too expensive or would the Treasury veto any changes? Mr Hoban confirmed that they would do what was right. There was no financial limit on how generous a new set of descriptors might be and these will be based on evidence not cost. He cited examples of more people going into the Support Group and how that had cost over a billion pounds extra in the first year, but that it had been accepted financially. Mr Hoban was particularly concerned by how long it was taking to assess people. He said that he was concerned about what is right even when improvements are difficult to implement and is keen to learn what works and doesn't work so that the process can be improved. He wants to see a test that is robust, is the right test and has credibility. If changes are identified that would improve the system, then the DWP accepts that. He said that the EBR is a good example of that, as it has proved harder to run thanoriginally anticipated but the DWP will use the evidence from the EBR to improve ESA. There are no financial limits from the Treasury, and no consideration of cost will be used to decide which descriptors are the best to use.

Sue mentioned concern about targets. Mr Hoban said DWP set no targets. He said they are only concerned about quality. If an assessor was an outlier (ie putting more claimants into the Support Group or WRAG than colleagues) then it is not that the assessor is an "outlier" that matters but that a need to check his or her assessments are right was all that mattered; if the assessments were correct then it doesn't matter that the assessor was an outlier. Mr Hoban was very clear that targets are the wrong thing, and that they have no place in a credible system. We suggested that Atos are using "norms" either way, even if not part of DWP guidance and it might be worth re-iterating with Atos that this shouldn't be the case.

Sam mentioned concern that assessors are saying they are told to presume zero points and award points grudgingly. We want to see an inquisitorial approach, not adversarial. Sue said that the balance of comments from claimants is that the HCPs are trying to trip people up. but maybe all that is needed is to remind Atos that their role is not to be denying people points or benefits.

Mr Hoban agreed with this and said that this is what DWP guidance to HCPs recommends; the HCPs are to gather the evidence as it is. Sue pointed out that whilst this is indeed the written DWP guidance, anecdotal evidence from HCPs suggests that this is not the case during in-house training. Again, taking this issue up with Atos may be helpful. Mr Hoban appeared to agree to this. Mr Hoban mentioned that WCA is just one part of the information that decision makers use; this is why Decision Makers do increasingly disagree with HCPs based on other evidence although we don't know what the 'right' number would be given that high levels of disagreement would also be concerning.

Sue said how pleased we were to discover that such a high proportion of claims were successful based on paper assessments alone, with no need for a stressful and costly WCA. She suggested this should be even more widespread and almost certainly could be if more GPs returned evidence in time. Mr Hoban appeared to agree that this was the best way of conducting assessments where possible.

On Mandatory Reconsideration, leaving people without income we pushed very hard, coming back at Mr Hoban several times to try to get some kind of compromise. We argued that it isn't consistent to give claimants 4 weeks to get evidence in when the DWP has as long as they want for reconsideration. MrHoban indicated some agreement and agreed to review this 6 months He said they need to see how it works in practice. We argued that in the meantime people are going without money, and would it not be better to give them this money during those first 6 months, and then review it. However Mr Hoban felt that as it was appropriate for these people to sign on for JSA, then there is no poverty issue. Sue pointed out that many would not be able to do that - herself included as her husband works. They would simply lose nearly £500 a month while they waited indefinitely.

Stef pointed out concerns over the appropriateness of Jobcentre Plus conditionality agreements, and theconcerns over the high percentage of successful appeals that were not borderline but instead had been severely under-awarded points initially when they should have very easily got over the 15 points mark. Sue pointed out that a very high % (16%) of Fit for Work decisions are inaccurate and that few disagreed that the system is flawed as it stands.

Unfortunately, Mr Hoban still insisted that these people had been found fit for work and it was reasonable to expect them to make other arrangements, time was running out and we had to leave the issue.

We devoted the final part of the meeting to arguing very robustly that Mr Hoban consider an alternative to WCAs that would be developed by all online groups in unity. We requested a follow-up meeting to present this alternative to ESA/WCA designed by the online disabled community. Mr Hoban agreed that he is very willing to listen to constructive and fully-worked out proposals. He was concerned that given the difficulties that large charities experienced in designing workable descriptors, that we need to be aware of the challenge we have set ourselves. He did however say that if someone has an alterative that works, that is fully worked out and includes an indication of why it would be effective, then that alternative should be presented. Michael Meacher pushed him on a follow up meeting. Mr Hoban concluded that if an alternative could be put together, they are always willing - including this meeting - to listen to ideas that are constructive."

So, we did our very best for you all. We felt quite pleased that the meeting had been so constructive and we had managed to cover so much in the short time available. If nothing else, some of the clarifications make it easier to know where things stand and what changes the government are considering in the short term to make the system safer and fairer.

Everyone now has the chance to design a better system that is robust and which works and the knowledge that the minister will at least consider our approach.

Saturday, 7 September 2013

After over 700 comments and years of passionate campaigning, this post will outline the issues I and other Spartacii intend to discuss with the Minister, Mark Hoban on Tuesday. Thank you so much. 700 comments is a credible consultation with a real mandate. There has been some discussion over whether this meeting should take place at all. However, after scouring social media last night, I saw much more support for engagement than refusing to engage.

Many, many people go their own way in campaigning. Quietly, and secretly behind the scenes. They fear exactly the kind of backlash I've had this week. These meetings are happening day in and day out. You just don't know about them. People don't publicise them, they don't ask what you think and they don't involve you in the process. Spartacus will never do that. It will always be YOUR voice. Paid by no-one, beholden to no-one, influenced by no-one but you.

This list will almost certainly cause controversy too. We have 45 minutes. There is no human way we can mention all of the vital things that are wrong with ESA and WCAs and why they need to change. It's impossible. Every time I wrote the list, someone reminded me of something else.

We have ALL campaigned on these issues. We ALL want them changed and we ALL agree they would make WCAs less harmful. The minister already knows all about them, MPs, journalists and campaigners have explained repeatedly. There is absolutely no reason why he should listen to Spartacus any more than he listens to anyone else. But that's no reason not to try.

Spartacus works for political change. We always have. From working with the Lib Dems to change their policy (incidentally, we persuaded them to vote to ABOLISH WCAs. That became Lib Dem policy) to fighting for amendments to the welfare reform bill. From lobbying parliament to compiling detailed reports and taking the government to court over PIP, they ALL attempt political change.

It's inevitable that occasionally, we won't all agree. That's fine. We don't have to. But we do have to respect the right of anyone to campaign in any way they choose. It's called democracy.

So, here are the issues we'll take forward based on YOUR recommendations and suggestions and the things that have upset you the most over the years. In some ways, they may not all be the most important (though I believe they are) but they are often issues the government have pledged to change already but have been slow to do so. Some are relatively easy for the government to implement, meaning there can be no true objection to them. Most are relatively low cost as we all know this government will refuse to spend a penny as an excuse to resist change.

But they are all vital and if they were all implemented fully as government often pledged to do, the WCA would be a much safer and less terrifying experience. If that's not worth fighting for, I'm afraid I fail utterly to see why.

Please try to be a little gentle over things we may not have included.

-Mandatory Reconsideration – Assessment phase payments MUST continue through MR. DWP MUST set a time limit. Sheila Gilmore has laid a lot of the groundwork for us on this so we shouldn't need to go into as much detail. the time period for submitting a WCA MUST be set back to 6 weeks. 4 weeks is not enough to collect all the evidence we need.

-Accessible Centres – No more excuses. New centres MUST replace the 29 inaccessible centres.

-Set Min Limits on Re-assessment – 3,6 and 9 month reassessment periods are ludicrous and only slow the system down. For us AND for government.

-Mental Health Champions – In EVERY centre. They promised this but there are still only 60 - less than half of all centres, It has to happen now. Why can’t it/hasn’t it so far & what needs to be done to achieve it?

-Recording Assessments – Every assessment, every time, just like interviews, call centres etc. This would show a real commitment to transparency and change. Again, they've promised, no more excuses.

-EBR (Evidence Based Review) – New descriptors NOW. 5 years is too long, Too many people have suffered. We were due an update on this months ago. Not one more person should go through a test using descriptors that are biased against them. In this we will also discuss the MHRN case.

GPs and medical evidence - The minister has maintained from the start that the more medical evidence a claimant has, the more accurate the outcomes. He MUST ensure that GPs are able to provide this evidence and not allowed to refuse. Assessors MUST take all evidence fully into account, looking at GPs/Consultants evidence and claim forms first, before considering a WCA

So, that's eight things. There are 800 more. As it is, we will have less than 5 minutes per issue. I really hope that you think this is a good list or at least as good as it can be in the circumstances. I hope you think it represents what you told us faithfully. If all of these changes were implemented in good faith, many thousands fewer would suffer. That has to be a goal worth fighting for.

Friday, 6 September 2013

Today, Sheila Gilmore has won a debate on a very specific area of welfare reform. The government have made it harder for people to appeal if their claim for Employment Support Allowance is rejected. First, they must now wait for a "Mandatory Reconsideration" which means that the DWP decision maker has to look at his decision again. In principle this is fine - in fact it would be a ggod idea, hopefully meaning that fewer people had to go through the stress of an unnecessary appeal.

BUT...and isn't there always a but with this government? Your ESA will be stopped during that period, meaning that for many there will be no income at all. To make things worse, the DWP have refused to set a tiime limit on how long Mandatory Reconsideration will take. So, in theory, we have a situation where your claim could be rejected, and you lose your only source of income indefinitely. If you plan to appeal, you can hardly sign up for JSA as doing so involves a declaration of "fitness to work".

If at the end of all this your appeal is successful, the money you lost would be refunded, but what good is that to people living with no income for a long as the DWP feel like leaving them? How would you eat in the meantime. It's a shocking situation that could cause untold suffering.

Debate on test for Employment and Support Allowance at 2pm on FridaySheila Gilmore’s speech sent to Minister responsible this afternoonMinister can have no excuses for not answering questions

In advance of a debate on the test for controversial sickness and disability benefit ESA, Work and Pensions Select Committee member Sheila Gilmore today took the unusual step of emailing an advance copy of her speech to the Minister due to respond, Mark Hoban.

The Work Capability Assessment (WCA) is used to determine whether people can get Employment and Support Allowance (ESA), which replaced the old-fashioned Incapacity Benefit in 2008. Since its introduction many claimants have been incorrectly found fit for work. Sheila Gilmore has secured a half hour debate on this issue at 2pm on Friday 7 September.

Speaking today Sheila Gilmore said:

Today I have taken the unusual step of emailing a copy of my speech for an upcoming debate to Mark Hoban, the Minister due to speak for the Government. Now he can have no excuse for not answering the important questions I intend to put to him.

Sheila Gilmore went on to say:

Since the introduction of the Work Capability Assessment, 4 in 10 people found fit for work have appealed their decision and four in ten of those appeals have been successful. I’ve been calling on the Government to fix the test and reduce these numbers for some time.

However on Friday I’m going to focus on those who are incorrectly found fit for work and appeal. In future these people will be left without any income while their claim is reconsidered by Civil Servants. Ministers have suggested that claimants could apply for Jobseekers Allowance, but they know that to get JSA you have to be fit and available for work.

In effect the Government will be saying to this group that they are too fit for ESA, but too sick or disabled for JSA. Ministers need to sort out this contradiction.

ENDS

Notes to Editors:Sheila Gilmore will focus on the support given to people who are incorrectly found fit for work during a period known as reconsideration – in effect an informal appeal to civil servants that has to take place before a case can be passed to independent Tribunal Judges. At present claimants can be paid ESA at a reduced rate during this period, but in the future they will have to apply for Jobseekers Allowance. A requirement of JSA is that people are fit and available for work, meaning many people who will eventually be awarded ESA will not qualify.See the email Sheila Gilmore sent to Mark Hoban here.Sheila Gilmore is a member of the Commons Work and Pensions Select Committee. You can view the committee’s website here.For more information please contact Matt Brennan, Parliamentary Assistant to Sheila Gilmore MP, on 020 7219 7062, 07742 986 513 or matthew.brennan@parliament.uk.

Thursday, 5 September 2013

Thank you all for the wonderful response to my call for your opinions on what we should bring up in the Spartacus meeting with Hoban on Tuesday.

Tomorrow, I will post about the results and lay out a set of "Demands" for the DWP to act upon immediately, with no more delays or excuses. I hope as many of you as possible will be able to read the post and tell us what you think of the "demands" in the comments below the article Also to feedback if you think we may have missed something vital. This will be a chance for ALL campaigners to decide a final agenda.

We will pick the issues based on 3 things :

Popularity - Ie, the suggestions that got the most mentions. That way YOU are all speaking for yourselves, not me or the others attending.Achievability - I believe it is vital in this particular meeting to focus on things the DWP have promised to implement but haven't or issues that we believe they can have little or no reasonable opposition to.Urgency - Some issues are now so pressing, they simply cannot wait another week.

Since I started campaigning 5 years ago, I've always been VERY clear that my intentions are to campiagn politically. Many of us have our own issues that we focus on - perhaps the removal of the Independent Living Fund, the PIP 20 metre rule, Atos...the list goes on and on.

But, for my sins, I took the political route, believing that no matter how broken our democracy might be, it's always worth fighting for change. I mean to elaborate on this in a longer post soon. From managing to get the Lib Dems to oppose WCAs as part of their official policy (though they were then whipped to go against their own grassroots :( ) to lobbying peers over the welfare reform bill. From Labour's appalling attempts at "tougher than the Mail" attacks on sick and disabled people to IDS multitude of failures, it's the political aspect of all of this that makes me come alive.

From producing the Spartacus Report to every article I've ever written, you might notice, if you re-read a few, that I am ALWAYS writing as though to an imaginary politician.

Spartacus fights for change using the democratic process. Any change. I believe the majority of the iron-tough people still wearing a Spartacus "twibbon" or promoting the #WOWpetition read this blog because they support that approach. I believe that any change, any improvements are worth fighting for.

Those attending will be Dave and I, Sam Barnett-Cormack (@narco_sam) and Stef Benstead (@stefbedstead). Obviously Michael Meacher will be there too, but in the interests of balance, I asked if Robert Halfon could come along. As one of the few Conservatives who have spoken out about Atos, I hoped he would add a little balance

As I said in the earlier post, My position on WCAs is that I believe they should be abolished. That hasn't ever changed any never will.

However, I don't believe that I can reject any opportunity to make things a bit safer in the meantime if I possibly can. If it saves just one life or one family falling into despair, it will have been worth it. If I go into the meeting demanding that WCAs are scrapped with immediate effect, that chance will be lost. I fought for over a year for this meeting.

This government simply will not scrap WCAs. As we all know and have learnt to our considerable cost, they will barely compromise on buying a few more recording devices to record assessments, never mind scrapping the benefit altogether.

However, one increasingly persistent campaigner insists that I ask your opinion on this. He feels that I am being undemocratic and arrogant. That's fine, it's absolutely his prerogative to disagree with my approach and any similar comments will be more than welcome on my blog.

However, I suggested his call for a vote was unnecessary. I've consulted you all every step of the way, and hundreds of you have taken the time to leave feedback and suggestions for the meeting. I will be taking forward the issues you say are the most vital to you. Most importantly however, I see the comments thread as a vote in itself, open to all and un-moderated. I felt that this campaigner's suggestion was simply one of many. If enough people wanted me to go to the meeting and insist on full abolition of WCA's, and many comments had called for it, I would absolutely present that view. It's not about me, it's about all of you.

I don't want anyone to criticise this campaigner. He feels passionately about this issue, and believes he's doing the right thing to ensure that I act with transparency.

Unfortunately, the discourse hasn't always been terrible pleasant, but that still doesn't make me any more "right" than he feels he is.

With all of this in mind, here's a link to a very quick "Yes/No" survey, written by this campaigner himself. I initially said I wouldn't post it. I suggested that if this issue was so very important to him, he should collect the evidence himself, and I'd gladly take it into account. After all, that's the "Spartacus way" lol

Often called "voodoo polls" votes like this have no real value as respondents are self selecting. However, it's harmful to all of our campaigns, if one of the "team" is unhappy and tweeting dissent that damages the overall movement.

With that in mind, the question is, would you vote for

A) Demanding full abolition of WCAs and refusing to discuss further compromises or improvements

or

B) Making it clear our position has always been to scrap WCAs, but also, raising some of the most punitive issues in the hope we can at least improve things a little.

Monday, 2 September 2013

Finally, after months of petitioning by Michael Meacher and myself, after a debate in parliament specifically on meeting "Spartacus", next week (10th September) myself and two other "Spartacii" who have been heavily involved in all ESA research will be meeting with the DWP Minister Mark Hoban.

We have 45 minutes - a generous time slot in parliamentary terms, but the merest blink of an eye with so much to put right.

Before I go any further, and indeed before I discuss anything with Mr Hoban, I want to make it perfectly clear that I believe WCAs and indeed the entire ESA system is flawed and should be scrapped. This has always been my position and it remains my position today.

For all of this week, DPAC are running a week of direct action, "Reclaiming our Futures" http://t.co/6OzxELYePK I would strongly urge you all to take part if at all possible. This is the way we will ultimately achieve real change.

However, I have a chance to explain to the minister how some of the worst elements of ESA and WCAs affect us and to petition for them to be changed. I will make my position on abolishing WCAs clear, but it would be naive to believe that we will come away from a 45 minute meeting having achieved that ultimate goal.

I DO believe however, that some elements of WCAs are intolerable and I already have an idea from previous consultations with you all what those things might be. However, before next week, I wanted to give you all one last chance to feed into this important opportunity.

If you were there with us and could say just one thing to Mr Hoban, change just one thing that might make the WCA process less harmful, what would it be? While DPAC, Black Triangle and other groups continue their excellent work to scrap the tests, what might make the process safer and less destructive in the meantime?
I'm a pragmatist. If we can achieve any change for the better, I believe it is worthwhile. If we can save just one person from taking their own life, or falling into starvation or despair, I believe it is worth trying. If we achieve nothing at all, we will be able to say that we tried. And tried. And tried. That we engaged with democracy whenever the chance arose and did all we could to make ESA safer.

I really hope that as many of you as possible leave comments below and share this post on Twitter, Facebook or other networks you use. If I go alone, I am one voice. If it is just the three of us attending, we whisper. If you all come with us, we shout and have the credibility to demand real change.

Wikio

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.